I needed to grab onto something
We went on the internet and since I had not received a diagnosis, I was looking up vascular anomalies because at home they did mention that she may have a vascular problem. So we started looking at vascular problems, vascular anomalies, and all this information just started popping up on the internet. There’s Sturge-Weber syndrome, there’s so many vascular problems, so trying (my husband and I not being physicians at all) to figure it out on our own and reading up on many, many problems (amputation of a leg, etc.) and so at the very beginning, it was very difficult trying to know what the outcome with Gabriela was going to be… I think having some information was helpful, but at the same time… You know, I wouldn’t have wanted anybody to say, “Well, I just don’t know.” I needed to grab onto something, but being misinformed also, just having little bits of information and you have to try to put the pieces together, is very daunting and very scary because you don’t know what it is, and within this umbrella of vascular anomalies, there’s threat of death and that is very scary, not knowing.
Mother of Gabriela, toddler, Klippel-Trenaunay syndrome
When your baby doesn’t look exactly like it’s supposed to
My husband spent a lot of the time on the computer and tried to find out as much information as he could about places that we could take him and about the condition itself. He found out about the golfer Casey Martin, who has a version of this condition and you know I had a new born so I didn’t have a lot of time to spend on the computer, but he did a lot of research and found out a lot of information. I think he was more shocked by it all even than I was at first. It was just unreal, almost, when you see your baby and it doesn’t look exactly like it’s supposed to.
Mother of Cooper, child, Klippel-Trenaunay syndrome
It’s very overwhelming
It’s very overwhelming. I think that part of that is the fact that we had this kind of intense, no information, really looking for guidance but nobody could give us guidance… that’s one of the reason that I started this group, this organization, is because we really struggled in the beginning, really felt very lost. Now, after the fact, I know that a lot of people still don’t have answers about the syndrome, about what it means for Riley’s lifespan, what it means for her health, but still having conversations with people now and hearing that from them—like, hearing people say, “Yeah, we don’t know, but here’s what we’ve seen.” That’s more helpful than not having any information.
[Later] We did lots of reading. When we found out that she had CLOVES, we immediately went to the internet because that’s what people do and found all the medical journals or medical articles that were written on it, and there were six articles but nothing else, really. So we read the articles, wrote down questions, and then really took the questions to our doctors. We would bring questions and ask questions as they came up, and a lot of it has been “we don’t know, this is what we’ve seen, but we don’t know what this means.” For Riley, because she is super spinally involved, there aren’t a lot of other kids like that, so it’s a lot of waiting and seeing which stinks.
Mother of Riley, child, CLOVES syndrome
We just dove in
We just dove in [laughs] and tried to find as much information, which there is very little information. When she was 4 months old, because she would just start bleeding for no reason. We didn’t really understand, and it was just scary because we didn’t know if she would stop bleeding…We typed in her syndrome on the internet. There’s a KT support group, we found that, and they’ve been a very tremendous help. We came here and they gave us information here, but other than that the support group really has been the best thing because she went and she was able to see other people like her, other kids that had, maybe not exactly the same but they were going through the same things. That helped her a lot.
Mother of Caitlin, pre-teen, Klippel-Trenaunay syndrome
Do not, by any means, Google the condition
It was something that no one that I knew was dealing with it, so there was no point of reference. So of course, the first thing that you do when you hear something like that is you go home and you start googling it, which is also the worst thing that you can do. There were lots of unsettling pictures, conflicting information, even one hospital website may say something completely different than what another one said. The first thing I figured out was do not, by any means, Google the condition, only speak with your doctor about it, and if you want to see pictures then they’ll show you pictures. They were very good at showing us pictures, like “Here’s a baby that we think Matt would look like and this is the best case scenario, and here’s one that we think is maybe worse than Matt but we’re really not sure.” So they were kind of able to show, which was much more settling than looking online.
Mother of Matt, child, Lymphatic malformation
Not having knowledge stressed me out
Talking to friends, and the internet did help, as long as you stayed away from the crazy sites or the extreme stuff. Once you knew what it was and you were diagnosed with a certain thing, then there’s clear documentation on what it is and what the side-effects are and things like that. Not having knowledge stressed me out. When we knew what it was, and what the protocol was and how we deal with it, and having a plan, having that plan and knowing was what de-stressed me. I think I would have liked to have talked to other people that had vascular anomaly issues, like kids, parents of kids that had something similar. Knowing how much they documented Anne, I don’t think there’s much known about bearded region hemangiomas, PHACES, there’s not much known about it, so I don’t think there’s a lot of other people I could’ve talked to but that might have helped.
Mother of Anne, child, Infantile hemangioma, PHACES association